Archive for July, 2012

Well, Borrellia, I have a wonderful new friend. She reached out to me a few nights ago. After reading our little blog, Borrelia. She too has been devastated by you. So I called her. And we talked. And connected. There is a reason we found each other.

THE LION. I shall call her Aslan, as in The Lion, The Witch and the Wardrobe by C.S. Lewis. To protect her identity but also to make some analogies using the Chronicles of Narnia series as my creative inspiration. Yes, she is like Aslan because underneath the tiny, sweet voice, is a powerful lion, fighting with strength and courage. Like Aslan, her life was “taken” until at last, a diagnosis is slowly bringing her back to life. Just as Aslan was brought back to life. How did a diagnosis bring her back to life, you ask? Because since 1997, my poor new friend suffered terribly. With serious and odd symptoms. Blood in her spine. A brain bleed. A hemorrhaged bladder. And most recently, paralysis of her arms. P-a-r-a-l-y-s-i-s. After one emergency room visit, they told her the paralysis was caused by a deficiency in potassium. Without even checking her electrolytes. That was the hardest they could try to help her? And later, doctors from one of Boston’s finest hospitals sent her home and excused the paralysis away as virus associated…and promptly, ordered a psyche eval. If that doesn’t make anyone feel like they are in a crazy fantasy world fighting for their life as Aslan did, I don’t know what would.

The Chronicles of Narnia: The Lion, the Witch and the Wardrobe (Photo credit: Wikipedia)

THE WITCH. Obviously, Borrelia, you are the witch. The White Witch. In the series, the White Witch terrorizes Narnia. You–you, Borrelia–terrorize our anatomy. In its entirety. The spell of the White Witch in the series is that Narnia is “perpetually winter, but never Christmas.” Wow…couldn’t have expressed better myself what life can feel like with you, Borrelia. And for my new friend….Forever winter….but without any Christmas….That feeling that in your world, the skies are gray and you can’t see the light, you can’t even be sure if there is a light anymore. Can’t be sure if joy exists. Or hope. Yes, that feeling. Winter. But never Christmas. And what about the White Witch’s special powers? Turning her enemies to stone with her wand? Borrelia…seems that is exactly what you have done to my new friend, turned her arms to stone–with the paralysis she currently faces. How dare you, Borrelia? How dare you.

THE WARDROBE. You are wondering how the wardrobe analogy fits in, Borrelia. It’s quite simple. My new friend and I…Aslan…we just “fit”. Like a glove. Like a shoe. Like a comfortable sweatshirt, whatever wardrobe analogy you can think of, Borrelia. We both experienced an agonizing journey–years–of symptoms and issues, with only questions and no answers. We suffered as moms, worried we would not be well–or alive–for our kids. We both felt we were dying, while the traditional medical establishment told us we were going mental instead. We now share the same lyme literate doctor, and shared the same piecing together of the diagnostic puzzle–inconclusive antibody tests, followed by low CD57, for the ultimate determination of lyme disease. And what about the coinfection we share (are you listening Bartonella??!) We share our outlook–one of gratitude. Yes, gratitude. Gratitude for finally having some answers. Gratitude for not having some of the other conditions we were tested for. Gratitude for an action plan. Gratitude for our positive attitude in getting through this. And now, gratitude that our journeys have brought us together. And you know what, Borrelia?? That makes me feel even more hope. For the both of us….like perhaps maybe our winter will have a xmas. Or better, yet, a spring.

English: Screenshot of The Mad Hatter from the trailer for the film Alice in Wonderland. (Photo credit: Wikipedia)

Okay. Okay, Borrelia. If anyone can be childish, it’s me. But this week, this week you win. The minute I believe deep down I’m 90% back, 90% recovered, you’ve gotta have a trantrum. In my bladder. And make me the Mad Bladder all over again. Thanks, Borrelia in Wonderland, thanks. I’m gonna keep going with this childish behavior theme here. Because I think I know what’s going on. I can visualize the little Red Rover, Red Rover game you have going on inside me. All you bacteria in there, attaching and linking to one another like an evil little game of Red Rover. And in doing so, creating a film or blanket of mucopolysaccharides. Which prevents anything from getting through it. Like antibiotics or antibiotic herbs, unable to reach you, their target! Technically, I realize, this is called bioflim. Hmmm. Biofilm is a biobitch. In fact, you probably invited your little microbe friends to join you in there. Like the lovely infectionista Bartonella. So now you are both protected from what I throw at you by this biofilm. Not only are you protected, you may actually be creating hybrid organisms within your little biofilm bubble. Is that why I continue to be the Mad Bladder? And InflameBrain? Is it the result of these, your childish biofilm games? That make treatment or full recovery almost impossible?

Well, I’ve got my new playbook, Borrelia. It’s called Insights Into Lyme Disease Treatment, by Connie Strasheim, author and fellow lyme disease sufferer, and the resource behind www.lymebytes.blogspot.com. Each chapter of her new book is written by a lyme literate physician, sharing their experiences, approaches, challenges and successes in treating lyme. I’m on chapter 3, Borrelia and getting some great tips. Maybe I’m going to throw some enzymes at you, like nattokinase supplements. Or maybe lysozyme. Or both. To eat away at the biofilm. To end Red Rover for once and for all.

You know, B. A few things I read really struck me. Like in chapter one by Steven Harris, M.D. Where he says the people who tend to heal from Lyme disease are those who don’t know how sick they are. I would say that fits me. I don’t like numbers. I don’t want to know my CD57 count. I do not want how I think I should feel to be determined by a number or test result. I avoid going back to the doctor for as long as I can. I’ve ignored follow up tests (not necessarily a good thing). And most days, I do well with this outlook–just keep on keeping on. But it seems just when I tell myself I’m 90% “back”, you suck me back in. Like today, making me feel like the Mad Bladder. Stopping four times to use the bathroom during an hour long commute. I guess I have to continue what Dr. Harris says his most successful patients have done–just get out there and do things, live life, and function despite the adversity.

Dr. Harris also wrote something else powerful. For the first time, I felt that an outsider actually understood the isolation and self-doubt you have made me feel, Borrelia. Dr. Harris writes, “People with Lyme disease are generally really sick, and have been this way for a long time, but their families, doctors or friends sometimes don’t believe that they are unwell….As a result, they feel isolated as if they have been living in a twilight zone, or are going crazy. So they develop a mistrust of others, and even of themselves, and they start questioning whether they are legitimately sick. The seocnd-guessing and this burden of guilt that people develop from being so pushed aside, is the number one most difficult aspect of having lyme disease”…

… Yup. That is a perfect description. Perfect. Just look at the self doubt today, Borrelia . I’m back! Wait, no I’m not. Wait, what if it’s not and never was lyme disease?” It never ends. And the feelings of isolation or of being misunderstood by family and friends? It’s why I started this blog in the first place, Borrelia. To let them into my world. To help them understand that while I appearred well, I was struggling, physically and mentally. And tired. And anxious. And absent-minded. And that there were real reasons behind this, not empty excuses, as hard as it may be to believe or understand.

You’re going to enjoy storytime, tonight, Borrelia. This Mad Bladder is going to start chapter 4! For more inspiration, more ideas, and more ammunition against your childish mind and body games! Good night, Borrelia in Wonderland.

Now THIS is interesting, Borrelia….my little 4-week experiment. As you know, B, most with lyme disease do need to adopt a gluten, dairy, and sugar free diet. Gluten and dairy contain proteins that can be inflammatory. Where lyme disease is already a highly inflammatory condition, diets containing gluten and dairy can make symptoms even worse. I guess I’m just beginning to realize that dairy can be such a big part of the problem regarding perpetuating symptoms. And you Borrelia, you are a spiral shaped sugar junkie, so starving you of sugar is….gratifying. Even if it means I don’t cheat with a pan of gluten free brownies while watching Mad Men as much as I used to. I’ve been gluten free for almost 4 yrs and that was because of an allergy identified even before lyme. Never been a real sugar or sweets person anyway so that’s not really an issue in terms of avoiding or cutting down. But never in my wildest stonyfield farms dream did I ever think I would, could or even should go dairy free….

My favorite, Almond Breeze almond & coconut milk

…Yet for 4 weeks, I did it, Borrelia Brie Burgdorferi! Me, I actually cut out my breakfast of granola and skim milk, my chobani mid morning snack, my cracker barrel cheddar cheese for lunch…and afternoon snack…and bedtime snack, feta on my salads and munster in my sandwhiches…I practically lived on dairy but I DID IT. I left it all behind…And in it’s place used almond milk, coconut, milk or a combination of the two. And so grateful for discovering how much I enjoyed especially the coconut milk and coconut milk yogurts….and my symptoms, Borrelia! The nerves in my hands and feet, ever short-circuiting…and buzzing…and tingling…and w/pins and needles…they grew….quiet. That’s right. Quiet. As quiet as they have been since you began sucking away at my nerves like a gogurt. Just maybe, maybe by taking away that source of inflammation, my nerves were finally able to start to heal. Or maybe it’s because coconut milk contain omega 3,6, and 9 essential fatty acids, nerve nourishing fats. Whether it was the elimination of the dairy or the addition of the essential fats or both, I’m not sure, Borrelia, but I was feeling like the NonDairy Queen!…

Until I cheated. Purposely. To see what would happen. And so here I sit, with pins and needles in my feet and a couple strong electrical jolts to the heel after bringing a little dairy back into my diet over the last several days. And the sensation of ants crawling under my skin. But I know what I need to do, Borrelia. Stick to limiting my dairy intake as much as possible. I’m not sure I can commit to giving up all those great gorgonzola & beet or mozzarella & heirloom tomato or cranberry & walnut & blue cheese salads that I so love and enjoy. I just might be willing to tolerate the occasional pins and needles. But I can certainly cut out the majority of dairy, including the above, a majority of the time. THAT I can do. Sorry, Borrelia. No milk and gluten free cookies for you tonite! Or the next night. Or the night after that….!!

“Lyme disease is the only infection I know of where we have a safe and effective vaccine, but it’s not available to the public,” says Dr. Allen Steere, the physician who uncovered the disease, as part of a special week-long series on wbur, in Boston. Say what??!

Yet, anyone can bring their dog to the vet for the vaccine. Borrelia, did you hear that?! That’s it! I’m getting us an appointment with a vet. W-O-O-F, W-O-O-F. I want my vaccine! If lyme can be prevented, why wouldn’t we want to prevent what has turned instead into an epidemic? And for those currently with lyme disease, why would anyone want to go through years of treatment (hard on the body not to mention the wallet), only to step outdoors the day they are proclaimed lyme or symptom free…and get infected by another tick? We are supposed to be okay with just saying oh well, here I am with the disease again and start over!? After years of struggling and treatment? And why, Borrelia, wouldn’t I want to have my family vaccinated to protect them from you? Okay, maybe the vaccine only applies to kids ages 14 or 15 and older, but I’ll take it. Why is our society protecting YOU and not ME or MY FAMILY? We’ll vaccinate pets, but we won’t vaccinate people. No offense to the Boston Terrier below, but that just doesn’t seem fair, Borrelia.

Boston Terrier Dog (Photo credit: Wikipedia)

One vaccine was introduced in 1998, do you remember that, B? But some taking the vaccine allegedly experienced arthritis, a common symptom of lyme disease. So all of a sudden class action lawsuits start flying around and the vaccine is pulled. And why wouldn’t other pharmaceutical companies be deterred after that? People can sometimes get chickenpox from the chicken pox vaccine. Yet we still vaccinate for chickenpox. Then there’s the controversy over MMR vaccines and the link to autism. Yet we still vaccinate for MMR. However people are so opinionated about YOUR vaccine, Borrelia, that the court of public opinion takes rank over protecting from infectious disease?? The FDA and CDC never agreed with the assessment that your vaccine was a danger, Borrelia. Yet the damage to its reputation had already been done and it could no longer be commercialized. Pharmaceutical companies withdrew them from the market and suspended development and some scientists who were proponents of the vaccine had to go into hiding.

As stated by Dr. Gregory Poland, a vaccinologist at the Mayo Clinic, in the wbur series, “So we know scientifically how to develop a vaccine that would protect against all this human misery. And yet, for these societal and cultural reasons, not scientific reasons, that will not be done in the foreseeable future in the U.S.”